← Back to January 2016

MCS Registries: Should they be Local, Regional, National, Supra-National, Continental and Global?

Theo de By, MBA, BSc
Den Haag, The Netherlands

No clinician would doubt the need to register the events and data with respect to the implantation and follow-up of patients with mechanical circulatory support (MCS).

Information about the course of therapy in individual patients, as well as the statistical evaluation of a group of patients over time, can teach us a lot about the effectiveness of the applied therapy. Specifically when, in this relatively new form of therapy, characterized by frequent innovations of the devices, evaluation of detailed information about the successes and failures is of great importance.

As history teaches, local registries, frequently developed by the treating physician(s) or their in-hospital ICT departments, became the source and the pride of professionals to demonstrate their local achievements.

Then, those who think big, and rightly so, develop initiatives to gather data on a larger scale. While in the USA hospitals were obliged to provide data to Intermacs, the Europeans created a voluntary registry, called EUROMACS, which connects with local and national databases. Thirty-seven hospitals have now joined, and another 34 are taking steps to follow. The difference between EUROMACS and other registries is that data are provided to professionals who wish to carry out clinical and/or scientific analyses. Further, data completeness checks by statisticians and on site audits add to the quality of the data. The development of a near real-time dashboard will enable the participating sites to benchmark their outcomes by comparison with the anonymous data of the other hospitals.

For reasons of different regulatory environments and spans of control, an agreement with the IMACS Registry sees to the provision of data on a global level. Thus we have connected the world of MCS from the ground up, from local to global, expecting that the clinical and scientific data will enable us to learn how to improve the care of patients with end-stage heart failure. ■

Disclosure Statement: The author has no conflicts of interest to disclose.

Share via:

links image    links image    links image    links image